Helmet Therapy for Babies: My Son's Story
The Early Days of Life
My son Adam was born weighing only 4 pounds, 9 ounces. Due to IUGR (Intra Uterine Growth Restriction), he was not gaining much weight in utero. Doctors felt that he would do better "on the outside." So at 38 weeks, I was induced. He was considered "full term," so his internal organs were fully developed. Amazingly, he was not sent to the NICU, and we were permitted to keep him with us. We were overjoyed that he was healthy and normal, albeit a tiny baby.
Because he was so small, he struggled with nursing at first. Once he did catch on and began to drink, he also had issues with reflux. His reflux wasn't severe enough that doctors thought he should be medicated. Instead, I just needed to keep him upright after nursing. In the middle of the night, this was especially scary. He would sometimes sound like he was gurgling in fluid, so having his head elevated was essential. He slept in a Rock 'n Play beside our bed. This helped to keep his head up and cradled his little body while he slept. I couldn't believe how well he slept in it! Our older son never slept more than two hours at a time, so this was great for a tired mom!
Adam was barely on the growth charts for his size. He really didn't start reaching any percentile marks until he was 6 months old. Because he was so small, he remained in the Rock 'n Play for sleep until he was 5 months old. I just didn't feel comfortable lying him flat, and he slept so well in it, I hated to give up the great sleep we were both getting.
I wouldn't learn until much later that keeping him in the Rock 'n Play may have contributed to the developing flat spot on his head. I also wasn't aware that he was especially susceptible to cranial deformation due to his extremely small size at birth.
Problems Begin to Arise
At around 4 months old, Adam's head started to look flat on the left back side. At his 4-month check-up, I asked the pediatrician about it. I was told it didn't look "too bad" and wasn't a concern. So, I didn't worry.
By the time he reached 6 months, it was time for another well visit. I again brought up the flatness in his head. By now, it had worsened, becoming much more prominent. Each time we bathed him and his hair was wet, it looked unmistakably asymmetrical in the back. The doctor (a different pediatrician in the practice) agreed that it was a bit flat, but he didn't think there was cause for alarm. When I questioned the possibility of a helmet, he told us that where he went to medical school, they didn't put much credence into helmet therapy. He said that studies have indicated they may not do much good. Again, I left and tried not to worry.
By 7 months, my husband really began to notice Adam's flat head. I always bathed Adam in the kitchen. One evening, I was bathing him and my husband commented on his head. He said it really looked flat, and he asked me what the doctor had said at his last appointment. I told him that the doctor wasn't alarmed and sort of shrugged it off. My husband encouraged me to make another appointment specifically to discuss Adam's worsening flat spot.
I called the next day and made an appointment. I happened to get the appointment with the last doctor we'd seen, the one who indicated that his medical training didn't really believe in helmets for babies. This time, however, I was determined to get somewhere. I requested that Adam be referred to a specialist. Because I asked, he gave me a referral to a pediatric craniofacial plastic surgeon. The notes from that pediatric visit state, "Assessment: Acquired Plagiocephaly, Impression: Mild, Patient Plan: Refer to Craniofacial at parent's request." This was honestly the first time I'd ever heard the term "plagiocephaly."
The Helmeting Process Begins
Meeting with the Craniofacial Doctor
By the time we were able to get an appointment with the craniofacial practice, Adam was already 8-1/2 months old.
The craniofacial plastic surgeon we met with agreed that Adam's head, on a "first look" basis, was flat on the left side in the back. She also pointed out that his left ear jutted forward slightly, and his left forehead was more prominent. I hadn't really noticed those issues before, but since she pointed it out, I then could see nothing else when I looked at him. She told me "you can't un-see something once you've seen it," but she assured me that no one else would notice it. She also added that I, as his mom, would always be his worst critic when it came to the head flattening.
Of course, at this point in our appointment I was crying. I felt so awful for Adam. But I was more frustrated that it had taken this long for someone to validate what I was seeing. The mom guilt was enormous. The doctor assured me I hadn't caused this, and some children are more susceptible than others to plagiocephaly. Her words were kind, but the guilt still remained.
The doctor then used a combination of tape measure and calipers to determine the cephalic index of his head, a comparison of the width to the length. This basically assessed the symmetry of the two sides of his head. According to her rough calculations, she believed that Adam fell in the lower moderate range of plagiocephaly. Given this information and degree of severity, Adam would qualify for helmet therapy. She prescribed a visit to a Certified Orthotist (C.O.) for a more accurate scan.
Fortunately, we were able to get an appointment quickly to have Adam's scan completed. We visited Union Orthotics & Prosthetics to have a "Starband scan."
I couldn't believe how simple the process was. I'd been quite worried the laser scan would be excruciating for Adam, especially since he always wanted to be held in my arms. However, I couldn't have been more wrong.
The C.O. fitted a stocking cap on Adam's head. He placed some stickers on Adam's cheeks that the laser would use to determine symmetry. He took Adam from me and placed him into a little, black, box-like bed that had pretty lights dangling above for distraction. In less than 2 seconds, the scan was over. 2 seconds!
Once the scan was complete, the results were instantly available on a computer. The C.O. showed us a 3-dimensional picture of Adam's head and also an overhead view diagram of his skull showing the oblique diagonal difference. This helped us really see that his left side was indeed flatter than the right. The results indicated that he had an 8.3mm difference. This put him in the category of moderate plagiocephaly.
That day, the orthotic company sent in a request to our insurance for coverage of Adam's helmet. They told us once insurance was approved, they'd order the helmet.
We waited and waited to hear from the orthotic company. This was becoming a concern because the scans are only accurate up to 3 weeks. If the helmet was not ordered in that time frame, the baby's head could change so much that another scan would need to be completed.
I finally called the Union Orthotics to check on the status of our insurance. I was told they, too, were still waiting but that they would make a phone call. Later that day, someone from the orthotic company called to tell me that our insurance had NOT approved coverage. Our particular policy would not cover a helmet in the absence of cranial surgery.
We were stuck between a rock and a hard place. What should we do? Should we forgo helmet therapy? Or should we bite the bullet and pay out-of-pocket?
My husband said that we should just go ahead and order the helmet. He said he didn't want our son to have a flat head over $2,000. Yikes!
So, I phoned the Orthotic company and told them to order the helmet without insurance. I explained we would be paying out-of-pocket. Now, the problem was that it had taken so long for the insurance to ultimately disapprove coverage, Adam had to be rescanned to ensure an accurate fit for the helmet.
A week later, we were back at Union Orthotics for another scan. This time, my father came with me because my husband was traveling for work. He was amazed at how quickly the scan was completed also. Interestingly, Adam's head had gotten worse during that time frame. He went from a 8.3mm oblique diagonal difference to a 9.7mm difference. This confirmed for me that we needed to do something.
I was checking out with the front desk, and my dad told me that he and my mom wanted to pay for the helmet. My dad, a retired Lutheran bishop, had recently had a speaking engagement and was paid... you guessed it.... $2,000. Talk about God's timing and grace! I was so grateful.
"Ice Age" Helmet
Adam was almost 10 months old by the time he received his cool "Ice Age" helmet. That was the design my husband and I selected. He looked so cute and pitiful all at the same time.
The day we picked up the helmet, Adam did not even wear it home. He just cried and screamed. The C.O. explained to us that "older" babies typically have a hard time adjusting. Boy did he ever! Younger babies usually do better and begin wearing helmets without much issue. The C.O. showed me how to place the helmet on Adam's head and how to remove it. He instructed me on cleaning and caring for it. Then he told me to just take it home and gradually get Adam used to wearing it. He gave me a weaning schedule in which Adam would wear it for one hour on, one hour off the first day. Two hours on, one hour off the next. On day 3, Adam would also begin to wear it to sleep at night. By day 5, he'd be wearing it for 23 hours a day. It would then only come off for bathing—an hour's "free time."
The first full night he wore the helmet was the worst night of his life. He just could not sleep. He cried and thrashed around. My husband and I took turns holding him and rubbing his back. Finally, out of pure exhaustion, he slept for a few hours in our bed. I felt so awful for him and wondered if it would ever get better.
Surprisingly, by day 5 Adam was pretty much accustomed to wearing the helmet.
We went to Union Orthotics every 2-3 weeks for measurements and adjustments. We were seeing some improvement, but it was very small. The C.O. kept saying he'd hoped for quicker and better progress with Adam, but given his advanced age, his head growth had already slowed.
At the 3 month mark, we went for another scan. This is a customary follow-up. This scan showed that Adam's head had improved to a 6.7mm difference. The helmet was certainly working, albeit slowly.
We were to follow up with the craniofacial doctor after that point. However, because our insurance was not covering much of anything with this whole process, we opted not to go. The C.O. explained ("off the record") that the craniofacial doctor would only just discharge us anyway.
We chose to have Adam wear the helmet for one more month to see if we could get any last ditch improvement. At the 4 month point, we went back to the C.O. for measurement with the calipers. He really did not measure any change. He told us that we could discontinue wearing the helmet because we'd probably maxed out on its use.
Adam wore his helmet for another week, but then he became very ill while we were on vacation at the beach. He had vomiting, diarrhea and became dehydrated and needed IV fluids. Sickness coupled with the summer heat was enough to end the helmet wearing process.
Adam is now 16 months old. His head is still flat, and I sometimes wonder whether we should have tried to just keep the helmet on him for a while longer. In writing this article, I tried a few times to put the helmet back on him... just to see. He quickly ran away from me and hid each time. He's done!
The plagiocephaly definitely looks better than it did. The asymmetry is not as noticeable. To me, his head just appears more flat throughout the back. He has thick blonde hair, so that does help to hide it.
We are not 100% pleased with the outcome, but we are glad we did the helmet therapy overall. Had we not, his head might have continued to get worse.
There are a few things, however, I regret and am thoroughly frustrated by:
Rock 'n Play
I had no idea that having him sleep in a Rock 'n Play could contribute to plagiocephaly. To be fair, I in no way blame Fisher-Price for causing my son's flat head. It was my choice to place him in it and to allow him to sleep there, as ignorant as that might have been. However, many people do blame them. Natasha Burgert, MD has an open letter to Fisher-Price in which she states:
As a pediatrician and parent consumer, I believe it irresponsible to promote the Rock n’ Play™ Sleeper as a safe, overnight sleeping option for infants. By continuing to do so, you are putting babies at risk.
The Rock n’ Play™ Sleeper should not be used for extended, unobserved infant sleep for the following reasons. First, design features of this product are known to increase the risk of sudden infant death syndrome (SIDS). Second, I have personally seen infants with brachycephaly/plagiocephaly and torticollis as a direct result of using this product. Finally, infants are often left with poor sleep habits that continue long beyond the product’s use.
She even goes so far as to recommend that her patients and those affected by the Rock 'n Play go directly to the Consumer Product Safety Commission to file a complaint.
I am dismayed that my son's pediatricians did not take my concerns more seriously. I'm appalled that a doctor might not "believe" in helmet therapy because that's what he was taught in medical school... basically based on one study. I think all pediatricians should be looking for the beginnings of plagiocephaly or brachycephaly early on in an infant's life. They should help point it out to parents and be proactive in getting babies the help they need. They preach "tummy time", but often I think parents don't quite understand what it's for. Babies also hate tummy time, so parents give up easily. Tummy time is not only to strengthen the neck, but it's also just to get pressure off the delicate head. Sometimes tummy time just isn't enough, however. With the "Back to Sleep" campaign in the early 1990s, many babies' lives were saved from SIDS, but many babies are now suffering from flat heads. Doctors should warn about plagiocephaly and show parents pictures of what it looks like so they can also be on the look-out. There is a very small window of time in which to treat babies with helmets. I am truly saddened that Adam did not get his helmet earlier in life. I do feel like the doctors failed us because I believe Adam could have had a better outcome.
Insurance is a frustration for many people. It's so devastating when things that are deemed medically necessary are not covered. $2,000 is no drop in the bucket. Some helmets are even more expensive. At this point, Adam's helmet really isn't fitting properly since he's grown. So if we wanted to continue with helmet therapy, we'd need to order a second helmet. That would be out of the question financially, especially given that he's at the upper limit for helmet therapy, and it may not even benefit him now. There are grants that can be applied for and organizations that can help with medical loans. However, if a baby needs a helmet, insurance should surely cover at least a portion of the cost. Helmet therapy is not always just cosmetic, and babies can be left with vision or hearing issues if the case is severe enough.
All in all, I feel blessed to have a perfectly healthy and very happy little boy. He's the cutest and sweetest baby I know (of course I'm biased)! I do hope for him that his flatness becomes less prominent as he ages and his head continues to grow. If not, at least I'll know we did try to help him, and above all, he is deeply and unconditionally loved for who he is.
For an overview and in-depth explanation of plagiocephaly and other cranial deformities, please read my article "Cranial Helmet Therapy for Babies: Can It Really Fix a Flat Head?"